1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Why aren't they studying XMRV and LYMPHOMA?

Discussion in 'XMRV Research and Replication Studies' started by Robin, May 19, 2010.

  1. Robin

    Robin Guest

    I just found out that my uncle is losing his battle with Mantle Cell Lymphoma. He will likely be no longer with us soon.

    Mantle Cell Lymphoma (MCL) is a rare form of Non Hodgkins Lymphoma which primarily affects men over the age of 60. The prognosis is poor. Most people die within 6 years of diagnosis. The treatments are pretty severe to buy those few years. My uncle went through a chemo/stem cell procedure two years ago; basically they removed some of his bone marrow stem cells, then used massive chemo to totally wipe his immune system. During this time he had to go into isolation because he was incredibly suseceptible to infection. Then he was given the stem cells back. He lost his antibodies and lifetime immunity; he needed to be revaccinated and everything. (This is the type of procedure that is being studied in MS, not the infusions that Cheney is having CFS pateitns get.) He couldn't go to the hospice to see my grandmother when she was dying because she had some hospital acquired infections and the germs were too risky for him.

    I think, but I'm not sure, that this is the type of procedure that killed Dr. Bateman's sister who had NHL (and CFS.)

    Supposely, Mikovits started studying XMRV in CFS because of Peterson's NHL patients, specifically the Mantle Cell because of the shocking incidence of it. Having witnessed the horror of MCL, I'm wondering why the WPI isn't looking into this?

    Lymphoma and Leukemias have been on the rise in the US for years while most other cancers have been decreasing. There have been no studies specifically looking into the incidence of lymphoma in CFS patients beyond a small observation study done by Peterson many years ago. This is a promising (and scary) avenue of research and yet it's being overlooked!

    It's possible that it's coincidental that my uncle has MCL but of course I'm wondering now if there's a connection between that and my CFS.
     
  2. HopingSince88

    HopingSince88 Senior Member

    Messages:
    335
    Likes:
    5
    Maine
    Hello Robin,

    I have started 2 or 3 threads about XMRV and cancer, and they have gotten little or no response from folks here. I am in agreement with you on this. I think all lymph-related cancer victims should be screened for XMRV. So in addition to lymphoma this also means all adenocarcinomas (which are cancers of lymph tissue). My husband died of adenocarcinoma of the stomach. I have an uncle with adenocarcinoma of the pancreas (stage 4 now). And lest we forget...it was an adenocarcinoma of the prostate in which XMRV was first found.

    I am hoping that oncologists are reading the literature, and that they are thinking outside the box...but I am not too hopeful that the message is getting to them as the research is in such early stage now. The other thing is that it may well be that researchers are doing studies on this, and we just don't know about it.

    I have 2 friends with cancers of lymph tissue, one is now stage 4 (not m uncle...this is a different person). I would like to recommend to them to get tested for XMRV, but don't really know what to tell them to tell their oncologist. Refer to Lombardi? Mikovits? just send links to the studies?

    I am on the edge of my seat waiting for the antibody testing to become available. This will make the whole process much easier.

    Best wishes to you uncle - that he finds answers soon.
     
  3. awol

    awol *****

    Messages:
    417
    Likes:
    0
    Robin,

    I think the picture on this will become clearer soon. I am sorry to hear about your uncle, that must be terrible.

    Right now we can't even imagine how overloaded the few researchers working on this are with trying to get funding, trying to get attention and respect for the Science paper, and trying to move their research forward strategically in a way that will benefit the most people. Once a real replication study comes back positive, because this is a retrovirus, there will be hundreds of researchers who will jump automatically on the relationship to cancer because that is one thing that is known about retroviruses for sure. Once it is established that XMRV is infectious and does cause illness, research on effects, treatments etc will move fast. This will, unfortunately not help your uncle much because he still already has cancer, and already needs to be treated for that. The XMRV is not his main problem now. But for the rest of the world, the important questions are, what is XMRV exactly? Where does it hide, how does it transmit, and how can its effects be mitigated early BEFORE it has any chance to cause cancer.
     
  4. HopingSince88

    HopingSince88 Senior Member

    Messages:
    335
    Likes:
    5
    Maine
    PS- I feverently hope that no politics come into play, if many cancers are in fact caused by XMRV. As this could mean that many patients will be switching from oncologists to ID docs; and switching therapies from chemo to anti-retrovirals. There is a huge industry that has built up around cancer. Finding a smoking bullet may not be in everyone's best interest. (Today I am feeling a bit cynical. I am usually not this way).
     
  5. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    Hello Robin,
    I think that they would probably investigate connection between XMRV and cancers, perhaps especially lymphoma and leukemia. I think I've heard something about lymphoma being caused by MuLV's, and leukemia... Well, even the name - Xenotropic murine leukemia virus-related virus - implies for it's potential to cause leukemia in human beings, as I understand MuLV's cause leukemia in animals.

    Now, regarding your uncle, I think that what I would have done is to offer him to get his blood checked by VIPdx (and if the WPI would be willing to do that themseleves, with their antibodies test - that would even be much better), and see if he is positive for XMRV - because, as I said, it's very possible that it might cause lymphoma, and anyway, if you might have XMRV, I guess it increases the chances that he would have that.

    If he would be found positive for XMRV, I think that what I would have done had I been in that situation, is to start treatment with antiretrovirals - and as we've learned it currently seems that the best ones are Raltegravir and AZT (Dr. Deckof-Jones mentioned, as I understand, that it seems that starting with AZT and then add Raltegravir works better - but that has to be investigated if your uncle would decide to start taking antiretrovirals). If he has XMRV (and that is a big "if"), and since, as you say, he's loosing the battle against cancer - What does he have to lose by starting treatment with antiretrovirals (I mean, the science here works too slowly to wait).
     
  6. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    So sorry about your uncle, Robin. Cancer is the worst. Four years ago I lost my 49-year-old husband to a rare EBV-related NHL. He had shown mild signs of CFS for years. I will never know if his NHL was related to my illness, but it has been on my mind a great deal since the news of XMRV broke. I hope for those with lymphoma as much as I hope for those of us with CFS, that XMRV research will lead to some breakthroughs.
     
  7. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    Lymphoma, research, and possible intervention

    Robin, firstly my heart goes out to you for your uncle's plight with Mantle Cell Lymphoma. I just pulled a few items together from my XMRV + Cancer puter file with the hope that something in there might be helpful. In no particular order:

    • Strong Association with Vitamin D Level & Lymphoma Progression & Survival
    December 21, 2009 by Sandy Robinson
    From: www.fightingfatigue.org/?p=8090

    The findings support the growing association between vitamin D and cancer risk and outcomes, and suggest that vitamin D supplements might help even those patients already diagnosed with some forms of cancer. Matthew Drake, MD, PhD

    A new study has found that the amount of vitamin D in patients being treated for diffuse large B-cell (non-Hodgkins) lymphoma was strongly associated with cancer progression and overall survival.

    See video: [FONT=&quot]Mayo Clinic Study Finds Vitamin D Associated with Survival in Lymphoma Patients. [/FONT]
    • Mikovits on Lymphoma research
    From: http://www.wpinstitute.org/news/docs/Invest_in_ME_20090529_Mikovits.pdf

    Nevada Cohort: Between 1984 and 1987, a cluster of 300 cases of CFS was identified in Incline Village Nevada. Recently, a subset of the Nevada CFS cohort (77 to date) have presented with clonal T Cell receptor gamma rearrangements. This abnormality is suggestive of a persistent infection and predicative of the development of lymphoma. For these studies, we isolated RNA, DNA and plasma From ~100 of this cohort at two time points Sept 06 and July 07
    • Peterson on Lymphoma research
    From Dr Peterson's CFSAC testimony 2009: http://www.youtube.com/watch?v=yUHCCbKpja8&NR=1
    7:15-8:29 The gamma T-cell clonal rearrangement was interesting to me because a number of years ago I found this very consistently in a subset of pts in the Nevada cohort And this is a rather complex slide, but if you look at the yellow line, the peer control is the peer control that is positive for gamma T-cell clonal rearrangement. Gamma T-cell clonal rearrangements are seen in pre-lymphomas and in certain viral infections. In this group of patients on the right youll see they had a very strong variable region 9 abnormality, and that is a group of patients that Im particularly concerned about and wanted to study further. So since the publication of the Science article we in fact looked at that group of patients as well as the group of patients that has developed lymphoma or leukemia or related disorders that came from the CFs cohort that Ive been following for 25 years. And interestingly youll see that not only did they all have clonal T-cell rearrangements, but every one that has been tested was positive for XMRV.

    Robin, I'd echo @omerbasket's comments that perhaps antiretrovirals (Raltegravir &/or AZT) might be an option? I also wonder, since EBV seems to be associated with Mantle Cell Lymphoma, whether Valganciclovir/Valcyte might be considered? These of course would need to be evaluated by your uncle's attending physicians, but perhaps something to be considered, given his dire straits?
    • Mantle Cell Lymphoma Consortium Scientific Workshop - Report From Sixth Annual Meeting
    From: http://www.medicalnewstoday.com/articles/155285.php
    Article Date: 25 Jun 2009 - 4:00 PDT

    [FONT=&quot] Almost 60 mantle cell lymphoma (MCL) specialists from around the world gathered in Atlanta, GA for the Lymphoma Research Foundation's (LRF) Sixth Annual Mantle Cell Lymphoma Consortium (MCLC) Scientific Workshop. Attendees heard presentations addressing several key issues including the biology of MCL, prognostic indicators, new molecular targets, chemoimmunotherapy, transplantation and novel therapeutic approaches.

    Might the Lymphoma Research Foundation, who established the Mantle Cell Lymphoma Consirtium, be able to offer guidance? Here is the URL for the Lymphoma Research Foundation, with their info on the Mantle Cell Lymphoma Research Initiative and Consortium:
    [/FONT]http://www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=2267459
    Hope something in here is helpful...

    Parvo
     
  8. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    (((((((((((((((((Camas))))))))))))))))))))))

    (((((((((((((((((Robin)))))))))))))))))))))))
     
  9. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    parvofighter,

    Thanks for posting Peterson's info on Gamma T-cell clonal rearrangements. I've been wanting to show that to my doc, but couldn't find it.

    spindrift,

    Thanks for the hug. I needed that!
     
  10. awol

    awol *****

    Messages:
    417
    Likes:
    0
    I'm not a doctor but I would be a bit hesitant about starting completely unproven anti-retrovirals on someone who is already fighting cancer. I assume that already means many medications that weaken the system, and anti-retrovirals are toxic. The vitamin D tip is excellent advice though. That can't do harm I don't think.
     
  11. spindrift

    spindrift Plays With Voodoo Dollies

    Messages:
    280
    Likes:
    2
    Camas, PM me for free hugs anytime!!!!!
     
  12. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    Everyone can choose for his own ofcourse, but had you have cancer in it latest stages, and you have been tested positive for XMRV, wouldn't you try taking antiretrovirals? It might be dangerous, yes, but wouldn't not treating be more dangerous, even though a connection between XMRV an lymphoma has not yet been established (again, when we talk about a person that has lymphoma in it's latest stages)?

    Vitamin D, I guess, cannot do much harm, or even any harm, and it might do good - but I would dought it's potential in curing a man who has progressed cancer (although I really can't say for sure it wouldn't do so).
     
  13. awol

    awol *****

    Messages:
    417
    Likes:
    0
    totally a choice. My point was just that I would be hesitant. Anti-retrovirals would not cure cancer even if the virus was the original cause.
     
  14. natasa778

    natasa778 Senior Member

    Messages:
    1,451
    Likes:
    1,289
    London UK
    We cannot be sure of that! No one can be sure that they would or would not stop the cancer.

    Worth trying imo.
     
  15. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Robin, I am so sorry to hear about your uncle. Hoping and Camas, I am sorry to hear about losing your husbands. That is horrible. I, too, have been thinking about my father when he died of a glioblastoma brain tumour in 1996. He was only 60 years old. I actually posted a new thread about this several months back. There was an article in the Economist in which the tumour (in glioma blastoma) that had live CMV but the surrounding tissues around the tumour did not. They used a vaccine to fight the tumour and it actually lengthened some of their lives and I believe a few people actually recovered (which is unheard of in this particular type of cancer). Ironically, several weeks ago, I was taking a claim for one of my insureds and he told me that he visiting the hospital and being treated for NHL. I told him to google XMRV when he got back home. I am surprised I still have my job because I tend to go off on other subjects.:Retro redface:I even made several friends and they connected me to their friends that have children with autism and seizures.
     
  16. HopingSince88

    HopingSince88 Senior Member

    Messages:
    335
    Likes:
    5
    Maine
    I think that there may also be the possibility of a peptide treatment, which is not so toxic, I think.
     
  17. Robin

    Robin Guest

    Thanks everyone for your kind thoughts.

    Hope I'm so sorry about your husband, and camas, you as well. And Jill, your father too! My sincere condolences. Cancer is such a horrible horrible illness.

    My uncle is well past the point of intervention at this point. It turns out that it's not the MCL that is killing him, but he has a second, different type of cancer that's metastasized into some of his organs. Everyone is shocked. It happened so quickly, a few weeks ago he was able and vigorous.
     
  18. camas

    camas Senior Member

    Messages:
    697
    Likes:
    196
    Oregon
    So sorry, Robin. My thoughts are with you and your family.
     
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    187
    Clay, Alabama
    Just because we don't know if they are studying XMRV and lymphoma, doesn't mean they aren't.

    Tina
     
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Sorry and hugs to all those here who have or had relatives with these NHLs.

    Robin,

    I strongly agree with you. The extremely strong association between NHLs and ME has been known since the beginning (the tahoe cohort outbreak) with very good people trying to work on it but of course they got no funding from NIH or CDC. Research on the connections between ME and XMRV on the one hand and NHLs and the other hallmark ME cancers on the other is absolutely essential and to my knowledge only one study (that would hardly even qualify as a pilot study just looking at incidence) has been done.

    It is also very important to publicize the connection, as WPI has been doing, for PR reasons- to get people to take ME as a serious somatic disease probably caused by retrovirus(es). Also the fact that ME - NHL connection is so incredibly strong is very important for PR since a lot of the science has shown tons of abnormalities, but the correlation of the vast majority to ME is somewhat weak or moderate.

    IMO, emphasizing the connection is the best and most straightforward and convincing argument to use against those who suggest psychogenesis, so that's what i tell them. Urge you guys to too!

    As Osler's Web noted, Burkit's Lymphoma was so rare in the US until the mid '80s that there were only about 10 new cases per year in the entire US!!! Of the tahoe cohort, I have read in different places that either 9 or 19 have NHL and I think (but not sure that) the majority of those are Burkitt's. (I have also heard talk on PR of 77 cases, but this is the number of people in the cohort with the clonal t-cell receptor rearrangement that often presages lymphoma- so i think this was just a confusion for this reason). There were others at Tahoe who contracted NHL but not ME.

    Then there was the curious case of the woman from South Africa, as detailed in OW. c. 1983 I believe, she contracted a viral illness just before leaving to visit four relatives in four parts of the US. She returned home and subsequently was diagnosed with Burkit's lymphoma which is relatively common in Africa and is associated with EBV infection. Later, all four relatives in four different parts of the US died of Burkit's lymphoma. Again the chance of any one individual getting this disease at that time in the US was about 30 million to one. One of these relatives visited Lake Tahoe just before the outbreak.

    That's an open and shut case for transmission of a microbe that causes both ME and NHL if there ever was one. Does anyone agree or disagree?
     

See more popular forum discussions.

Share This Page